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PF & the 5 Stages of Grief: A Tribute to Claire Wineland.
It is likely that many of us have heard of the 5-stages of grief according to skilled psychiatrist, Elisabeth Kübler-Ross. It is important to remember that the stages of grief are not only applicable to the death/loss of a loved one, but also following the diagnosis of a life-threatening illness such as idiopathic pulmonary fibrosis (IPF). I have focused on grief responses of children in my higher-level education (Masters degree thesis) and yet, the fact that I would be going through these stages of grief following my own IPF diagnosis eluded me.
After going back to my textbooks and reading various online sites about the 5 stages of grief, I was able to apply each of the stages to my own experience of living with a life-threatening lung disease. The other important thing to remember is that these stages are not necessarily linear, especially for those of us navigating a chronic illness versus losing someone we love due to death and dying. I certainly don’t stay in one stage all the time, and often go back and forth.
In my personal experience, I believe the two stages of grief that I experience most are anger and depression. However, I have also experienced acceptance (the final stage of grief, according the literature) occasionally and I wanted to share with you who was responsible for helping me get there:
Claire Wineland is a strong advocate for lung diseases, and oxygen use. She had Cystic Fibrosis (CF) and I admired her fierce personality so much, and her willingness to talk about “the hard stuff” such as death and dying at a young age. She made it okay to talk about it, and I related so easily to her because of my age and my academic ‘interest’ (I use that term loosely) in the death, dying and grieving process. Claire died this weekend, one week after a “successful” double lung transplant. Although I didn’t know her personally, I am grieving her death and attribute my ability to accept my fate as a young adult with a life-threatening lung disease to her. She was a social media star, gaining world-wide attention and highlighting the profile of not just CF but all lung diseases. Rest in sweet peace Claire, your foundation will live on in your honour.
Which stage of grief do you experience most since your diagnosis of IPF/PF?
Has anyone helped you move through these stages of grief, like Claire has for me? -
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